From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia

Journal of Aging Studies 23 (2009) 131–144

Contents lists available at ScienceDirect

Journal of Aging Studies j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / j a g i n g

From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia Wendy Hulko ⁎ Aging and Health Research Centre, Thompson Rivers University, Canada Centre for Research on Personhood in Dementia, University of British Columbia, Canada

a r t i c l e

i n f o

Article history: Received 4 June 2007 Received in revised form 1 October 2007 Accepted 1 November 2007 Keywords: Intersectionality Social location Subjective experiences Socio-cultural context Grounded theory

a b s t r a c t Research on subjective experiences of dementia has paid scant attention to social location, due to fairly homogeneous samples and an inattention to socio-cultural diversity in data analysis. This article addresses this gap by presenting findings from a grounded theory study of the relationships between the experiences of older people with dementia and the intersections of ‘race’, ethnicity, class, and gender. Data generation occurred through a series of interviews, participant observation sessions, and focus groups with eight older people with dementia whose social locations varied from multiply marginalized to multiply privileged plus over 50 members of their social worlds. Their experiences of dementia were found to be varied, ranging from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’, and to be related to their social locations. Negative views of life with dementia were not nearly as universal as past literature suggests and social location was found to mediate experiences of dementia. © 2008 Elsevier Inc. All rights reserved.

It is only recently that the views of people living with dementia have been elicited in any kind of detailed or systematic fashion (Braudy Harris, 2002; Keady & Gilliard, 1999; Phinney & Chelsa, 2003; Snyder, 2001; Steeman, de Casterlé, Godderis, & Grypdonck, 2006; Wilkinson, 2002; Woods, 2001), and the results presented to the world as legitimate accounts of an illness that previously had been thought to preclude any kind of reflective or narrative accounting (Cotrell & Lein, 1993; Cotrell & Schulz, 1993; Downs, 1997; Froggatt, 1988; Lyman, 1989; Robertson, 1990). While these ‘insiders’ perspectives' (Harris & Sterin, 1999) can be uncovered in a range of sources, including auto-biographical or semi-autobiographical accounts, qualitative research reports, web-sites, and newsletters, the majority belong to people in the early stages of dementia (Steeman et al., 2006) who are members of the mainstream, i.e., white, middle-class, Anglo–Saxon, heterosexual (Hulko, 2002; Marshall & Tibbs, 2006; O'Connor et al., 2007). Moreover, efforts at identifying

⁎ Social Work and Human Service, Thompson Rivers University, 900 McGill Rd., PO Box 3010, Kamloops, BC, Canada, V2C 5N3. Tel.: +1 250 377 6130; fax: +1 250 371 5697. E-mail address: [email protected]. 0890-4065/$ – see front matter © 2008 Elsevier Inc. All rights reserved. doi:10.1016/j.jaging.2007.11.002

heterogeneity in dementia do not always integrate sociological understandings of difference and diversity, which results in the use of concepts like gender, race, and socio-economic status, without any kind of accompanying power analysis (see for example Cohen-Mansfield, 2000; Snyder, 1999). Due to this lack of heterogeneity, it is no surprise that the ‘illness narratives’ (Kleinman, 1988) of people with dementia are remarkably similar (see Harman & Clare, 2006). The enduring image of dementia promoted by this body of work is overwhelmingly negative, with the narrators often being lauded for their remarkable resilience in the face of such a harrowing experience. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders (Cohen & Eisdorfer, 1986) is perhaps the most recognizable example of a book offering a pessimistic view of life with dementia, which is not that surprising as it was authored by outsiders (health care practitioners) and is consistent with the way that Alzheimer's was being socially constructed at the time (Gubrium, 1986). More recently, Svanström and Dahlberg's (2004) phenomenological study of spousal couples with dementia found four key themes: imbalance in responsibility, futility, hopelessness, and homelessness. It is perhaps significant that only five out of 14 people with dementia agreed to participate in this study. Moreover, the worldview

132

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

of researchers and practitioners undoubtedly influences their conceptualization of dementia and attitudes towards those living with cognitive impairment, as “what you see in your data relies in part on your prior perspectives” (Charmaz, 2006:54). If a researcher is lacking ‘epistemic privilege’ (Narayan, 1988) or knowledge based on lived experience, this may bias any results. Following this logic, we would expect subjective accounts by persons with dementia to offer more nuanced or complex views of dementia. The uniformity of dementia experiences also can be gleaned in first-person accounts, however, as suggested by a few of the titles: Living in the Labyrinth: a Personal Journey through the Maze of Alzheimer's (McGowin,1993); Who Will I Be When I Die? (Boden, 1998); and Losing My Mind: An Intimate Look at Life with Alzheimer's (DeBaggio, 2002). The first published narrative of life with dementia was written by an American evangelical preacher and his wife and presented dementia as hell on earth (Davis, 1989). This imagery of hell is used in DeBaggio's (2002) autobiography as well, as in ‘a story of hell to tell’ (p. 1). The next significant offering that appeared nearly a decade after Davis (1989) was also quite negative and was written by a woman who had been a policy advisor with the Australian government (Boden, 1998); the author did, however, present herself as more resilient than Davis in coping with the trials of life with dementia. Evidence of this doom and gloom orientation towards dementia is found throughout DeBaggio's (2002) memoir: “tied to a teetering mind that had begun a slow descent into silence” (p. 3), “an unfinished story of a man dying in slow motion” (p. 6), “this disease's slow, gruesome torture” (p. 45). Boden has since published a second book about her life with dementia and the title alone — Dancing with Dementia: My Story of Living Positively with Dementia (2005), indicates that her conceptualization of dementia may have become less negative over time, perhaps due in part to her involvement with Dementia Advocacy and Support Network International (DASN). A close reading of texts such as these has lead to the identification of specific themes, beyond the negativity indicated by the titles, including a strong sense of self and enduring social identity (Basting, 2003), striving for normalcy and intersectional thinking (Hulko, 2002), and embodied intentionality (Kontos, 2003). Taking the standpoint that Alzheimer's/dementia is a ‘social disease’ (Gubrium, 1986:210) or ‘a social state of affairs’ (Bond, 2001:60), this work counters somewhat the negative depictions offered to date by heath care practitioners and people with dementia. However, the core description of the experience of dementia — as an overwhelming challenge to be struggled with, defeated by, or succumbed to, remains largely unshaken. Moreover, there have been few serious attempts to diversify the group of insiders and to analyze the influence of social location on their experiences of dementia. This article is one attempt to begin to fill this gap. Through examining the ways in which socio-culturally diverse older people with dementia conceptualize their experiences of living with memory problems and analyzing the role and influence of their social locations, I have been able to construct a rather different portrait of life with dementia. This article starts with a brief description of the empirical research from which the data were derived, including the theoretical framework underpinning this

work. It then moves on to a description of the range of views of dementia and an analysis of the links between these views and the social locations of the participants. Finally, the article concludes with implications for policy and practice, including suggestions as to how best to respond to a phenomenon that is viewed as hellish from the outside, yet may be termed ‘not a big deal’ or a ‘nuisance’ by those on the inside. Research design The research reported herein was exploratory and qualitative, owing to the lack of previous research on this topic (Disman, 1991; Downs, 2000; Hulko, 2002) and interest in creating an in-depth (rich, nuanced, contextualized) portrait of life with dementia, which cannot be accomplished using quantitative methods. Qualitative research is better suited to exploring lived experiences, teasing out participants' perspectives on the role and influence of social location on their lives, and developing theoretical insights into the phenomenon under investigation (Kirby, Greaves, & Reid, 2006; Mama, 1995). The specific methodology was grounded theory (Charmaz, 2006; Glaser, 2001; Glaser & Strauss, 1967; Strauss & Corbin, 1998) informed by feminist and anti-oppression perspectives on research (Brown & Strega, 2005; De Vault, 1999; Fine, Weis, Weseen, & Wong, 2000; Kirby et al., 2006; Mama, 1995). Grounded theory aims to go beyond the description of a phenomenon towards an explanation of it (Glaser & Strauss, 1967) and has been referred to as “systematic inductive guidelines for collecting and analyzing data to build middle-range theoretical frameworks that explain the collected data” (Charmaz, 2000:509). Key strategies include: the simultaneous collection and analysis of data, constant comparative method of data analysis, theoretical sampling, and memo-writing (Charmaz, 2006). Anti-oppressive research is an approach to research that takes seriously Lather's (1991) challenge that “those of us who do empirical research in the name of emancipatory politics must discover ways to connect our research methodology to our theoretical concerns and political commitments” (p. 172). As such, research relationships take on a markedly different form, with the researcher striving to research ‘with’, rather than ‘on/about’, acknowledging his/ her social location and subjectivity, and facilitating the voice and inclusion of research participants. Although grounded theory accords well with feminist (or anti-oppressive research) in that it recognises multiple realities and the influence of structural conditions and views theory as a process (Wuest, 1995), as a methodology it is not ‘inherently anti-oppressive’ and therefore needs to be ‘reconceptualized/ retooled’ to ensure congruency with anti-oppressive research (Potts & Brown, 2005:282). One of the objectives of this research was to ascertain the effectiveness and applicability of anti-oppressive research methods; this paper does not address this aspect of the research, however. Theoretical framework The theoretical concept of intersectionality (Crenshaw Williams, 1989; see also Brah & Phoenix, 2004; Calasanti, 1996; Crenshaw Williams, 1994; Dressel, Minkler, & Yen,

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

133

was reached, as per the tenets of grounded theory (Charmaz, 2006; Glaser & Strauss, 1967).3

1997; McCall, 2005; McMullin, 2000; Valentine, 2007; YuvalDavis, 2006) and its corollary of interlocking oppressions (Collins, 1990) underpinned this investigation into subjective experiences of dementia. Essentially, this means that I did not attempt to tease apart various strands of the participants' identities (Lorde, 2001; Vincent, 1995), rather I treated them as holistic (intersectional) beings subject to relative amounts of oppression and privilege in their daily lives (Calasanti, 1996; Calasanti & Slevin, 2001). As a theoretical framework, ‘intersectionality and interlocking oppressions’ is invaluable in seeking to understand experiences of marginalization and privilege, as “intersectional paradigms remind us that oppression cannot be reduced to one fundamental type, and that oppressions work together in producing injustice” (Collins, 2000:18). Intersectionality can be a difficult concept to operationalize and, while a number of gerontologists have written cogently on interlocking oppressions in later life (see Calasanti & Slevin, 2001; Dressel et al., 1997; McMullin, 2006; Vincent, 1995), few have engaged with this ‘micro-level sociological concept’ (Collins, 1995, as cited in Dressel et al., 1997) at a theoretical level. Oppression can be defined as a condition in which a particular social group is exploited or constrained for the benefit of another social group, whose members may not be conscious of either their privilege or their culpability (see Bishop, 2002; Freire, 2001; Mullaly, 2002). The privilege held by the group benefiting from such a dynamic relationship is not always due to an elevated social class position; it could be the result of ‘white privilege’ (McIntosh, 1989), male privilege, or heterosexual privilege, for example. As Hulko (2004) explains, “we each possess different degrees of oppression and privilege based on our relative positioning along axes of interlocking systems of oppression, such as racism, classism, sexism, enthocentrism, and ageism. Where each of us lies in relation to the centre or the margin (hooks 2000) — our social location, is determined by our identities, which are necessarily intersectional” (p. 238). The research question — reflective of both the theoretical perspective and the exploratory nature of the research, was: what are the relationships between the experiences of older people with dementia and the intersections of ‘race’1, ethnicity, class, and gender?2 The author conducted field research between December 2002 and August 2003, following four months of negotiating access and obtaining ethics approval from university and hospital ethics committees. During the nine months of data collection, participants were selected by theoretical sampling and the data collection and analysis occurred simultaneously, until theoretical saturation

The main research participants were eight communitydwelling older people with dementia who ranged from multiply marginalized to multiply privileged on the basis of their ethnicity, gender, class, and ‘race’ and were accessed through a hospital outreach program for older people and a local Alzheimer Society. The participants were not chosen to represent particular ethnic, racial or class groups; rather they were grouped based on the relative amounts of privilege and oppression to which they were subject due to the unique configurations of racialization, ethnicity, social class, and gender expression in each of their beings. For example, while ‘Nancy Matheson’4 may appear to be the most privileged of all the participants if one focuses largely on social class, her identity as a woman renders her subject to oppression on the basis of her gender expression. Being (presenting herself as) a woman marks her as different (less) than the “dominant and privileged norm citizen: white, heterosexual, middle class, man” (Verloo, 2006:217) who is also Anglo–Saxon, ablebodied, and middle-aged. All of the participants share a nonnormative (privileged) status due to their (dis)ability (dementia) and age (older than 65 years), yet they differ from one another based on gender, class, ethnicity and ‘race’. The ages of the research participants ranged from 74 to 87 years, with an average of 77 years; and all but one of the participants had a diagnosis of Alzheimer's disease, with the degree of cognitive impairment ranging from mild (4) to moderate (3) to severe (1). The multiply marginalized group included: Angela Huggins — a mixed race, middle class woman, born in the West Indies; and Ester Hernandez — an Asian, working class woman, originally from the Philippines.5 The members of the in-between group were: Joe Brown — a black, working class man, of Anglo–Canadian origin; Bosse Knudsen — a white, middle class woman, who had immigrated from Denmark; and Julianna Molnar — a white, Hungarian Jewish woman, who became middle class when she immigrated to Canada. Lastly, the multiply privileged group was made up of: Jim Heather — a white, upper middle class man, originally from New Zealand; Gus Holden — a white, Anglo–Canadian, upper middle class man; and Nancy Matheson — a white, upper middle class woman, born in the United States of America. In addition to these primary research participants, more than 50 additional people took part in the research

1 I use ‘race’ in quotation marks and racialized people (Fanon, 1963) to denote that I subscribe to the view that race is socially constructed (see Haney López, 1995), and that it should remain an important focus of sociological analysis as long as the attributes ascribed to different ‘races’ and the resulting hierarchies remain in existence, shaping our experiences of privilege and oppression (see Crenshaw Williams, 1994). Furthermore, ‘race’ and ethnicity should not be conflated as these are distinct identity categories that differentially affect experiences of privilege and oppression (see Desfor Edles, 2004; Oommen, 1994) and we all have an ethnicity, despite the tendency to view ethnicity as a characteristic belonging only to ‘ethnic others’ or ethnic minorities. 2 The ordering of these aspects of social location is not an indication of their relative importance; these identity constructs appear in different configurations throughout the text.

3 Although the sample size was small, new insights and divergent ideas did not arise in the later interviews; rather, the conceptual categories and emergent theory were refined. Grounded theory does not require a set/ minimum number of participants, as data sources are multiple and their selection theory-driven. Nevertheless, the theory merits further refinement and elaboration with a larger and even more diverse sample. 4 All the names in this article are self-selected pseudonyms. 5 Unfortunately, I was unable to recruit a third multiply marginalized person with dementia: a First Nations woman of lower socio-economic status withdrew prior to the first interview; nor was I able to recruit another male: a French-Canadian middle class male who was also gay declined at the second information and consent meeting.

Research participants

134

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

through their association with the individuals living with dementia. This group included family members, neighbours, friends, service users, service providers, and employees who were involved in the participant observation sessions, as well as the significant others6 who were part of at least one of the two participant observation sessions and were invited to the focus groups at the end. Data collection and analysis The data were collected through a series of interviews and participant observation sessions over a one to two month time period with each of the eight primary research participants, their significant others, and other members of their social worlds. The participants and the participant observation sessions (settings, timing, activities, people) were purposively selected based on the data analysis; the goals were to confirm or disconfirm the working hypotheses and build the theoretical framework (Glaser & Strauss, 1967). The data collection also involved photography and photo elicitation (see Alexander, 2001; Becker, 1974; Grady, 2001; Harper, 2000), which have been recommended for research with people with dementia (Allan, 2001) and older people (Wenger, 2002), as questions about photographs or objects can provide a good starting point for discussion and make it easier to talk about sensitive subjects, plus photographs of artefacts can be useful data. Visual methods such as these are said to be congruent with grounded theory, as both forms of research enable the comparison of emic (insider) and etic (outsider) perspectives and use an iterative process of data collection and analysis (Prosser & Schwartz, 1998). The visual data created were of people with dementia interacting in their social worlds, and of the significant objects that were shared with the researcher. Although this data was not systematically coded, they were used to help build theory (Harper, 2000) and as such, were instrumental in the discovery and articulation of the second category of my grounded theory — othering dementia. Visual materials such as photographs taken at the observation sessions, the images of older people that I brought to the initial interviews, and artefacts in the participants' homes, were used as tools to prompt discussion about the overall research question. At the second or third interview, I asked participants to show me a photo or object that might assist in answering the question — ‘how does who you are as a person shape living with memory problems’, and to describe the meaning that it held for them. After an initial consent and information meeting, I began with an individual interview with the older person with dementia, followed by the first participant observation session, then held a second individual interview (older person with dementia) and took part in the second participant observation session, and ended the process with a third interview (older person with dementia). This resulted in a total of 24 in-home interviews lasting between 40 to 90 min and 17 participant observation sessions of two to three hours in length at various settings, including a church group, staff meeting, birthday party, pub, doctor's office, family 6

Significant others refer to family members in this study, as in the end that is all this group included. Specifically, there were four opposite sex spouses (2 male, 2 female), three adult daughters and one adult niece.

cottage, art class, and adult day program. In addition, I held two focus groups with the participants and their significant others at the end of the research process to get feedback on the preliminary findings.7 The total number of data collection points equaled 43. Data collection was interspersed with data analysis — that is, this was an iterative process, with the interview questions, observation sites, and research participants being determined initially by theoretical sensitivity (Glaser, 1978) and later by the ongoing data analysis and working hypotheses. The interviews were structured around the individual's self-identity and social location and his/her experiences of living with cognitive impairment and took the form of a dialogue, rather than a rigid question and answer format, consistent with a relationship-centred approach to dementia care (Nolan, Ryan, Enderby, & Reid, 2002; Zgola, 1999), a reflexive approach to research (Charmaz, 2000; Fine et al., 2000), and active interviewing strategies (Holstein & Gubrium, 1995). Although I began with an initial interview guide, the questions were altered, discarded, and replaced on an ongoing basis and a new interview guide created each time in order to meet the analytical requirements of grounded theory research, including refining and verifying the evolving conceptual categories. The interview questions were designed to evoke subjective reflections on living with cognitive impairment as a person of a particular ‘race’, ethnicity, gender, and class and made use of conversation aids, such as varied images of older people and third person questioning (Allan, 2001; Dewing, 2002). Initial interview questions included: What words describe you as a person? When you think of yourself, what image comes to mind? Tell me about your memory. What does it mean to you to have Alzheimer's disease? How does your being a [insert participant's words] shape your experience of living with memory problems? The observation sessions took place in a setting or at an event that held significance for the person with dementia and this was negotiated at the end of the first or second interview, sometimes with the involvement of the significant other. During these sessions, as a participant-observer, I interacted with those present as appropriate: engaging in informal interviewing (Chenitz, 1986), taking photographs as permitted, and making brief notations on my observations and reflections. After leaving the scene, I expanded upon my notes and wrote them up in full for coding as soon as possible after the event. I hoped that these observation sessions might provide additional, and possibly conflicting, information to that garnered through the interviews (Hubbard, Downs, & Tester, 2003; Lambert & McKevitt, 2002) and that they would allow me the opportunity to record non-verbal communication and interactions with others which have been shown to be meaningful and purposive for people with dementia (Hubbard, Cook, Tester, & Downs, 2002; Seman, 2002). Participant observation helps to balance “what people say with what they actually do” (Ikels, Keith, & Fry, 1988:283) and to “situate an interviewee's statements and the circumstances of the interview as far as possible in the broader contexts of 7 Unfortunately, two of the participants (Ester Hernandez and Joe Brown) were unable to attend the focus group in Toronto at the last minute. I gave each of them the one page handout afterwards, but did not receive any feedback.

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

that person's life” (Lambert & McKevitt, 2002:211). Using participant observation in this study, provided another means to assess the influence and interaction of gender, class, ‘race’ and ethnicity on the participants' experiences of dementia, which was not easily articulated in an interview. Consistent with grounded theory, the data analysis activities included: preparing the data; reading and looking at the data closely and repeatedly; asking questions of the data; coding the data line by line; forming two levels of codes (concepts and categories); comparing within and across cases; writing theoretical memos; developing working hypotheses; diagramming relationships; and sorting the analysis into a coherent theoretical framework (Charmaz, 2000, 2002; Glaser & Strauss, 1967). Three categories emerged from the data analysis: experiencing dementia; othering dementia; and theorizing dementia, which together formed my grounded theory of the relationships between older people's experiences of dementia and the intersections of ‘race’, ethnicity, class and gender. This grounded theory posits that experiences of dementia are shaped by the complex interaction of identity constructs such as race, class, gender and ethnicity; hence, views on life with dementia, responses of others, and meaning making will vary based on the social location of the person with dementia. Due to the complexity of this work, this article pertains only to the first category of ‘experiencing dementia’, upon which the two other categories build. Throughout the research, I made use of process consent (Allan, 2001; Dewing, 2002, 2007; Hubbard et al., 2003; Reid, Ryan, & Enderby, 2001) which required the ongoing negotiation of consent or assent from the persons with dementia, as well as the procurement of informed consent from their legal substitute decision makers for those who were incapable of providing informed consent. The participants selected their own pseudonyms – the names appearing in this article; and the words of the participants are presented verbatim – they have not been cleaned up or edited other than for space. Interpreters were used with two of the participants (‘Ester Hernandez’ and ‘Julianna Molnar’) and their words should be read as spoken in their native languages (Tagalog and Hungarian respectively), unless otherwise noted. Trustworthiness and limitations To ensure the trustworthiness of the data, I used numerous techniques proposed by Lincoln and Guba (1985) for qualitative research: persistent observation in the form of “purposeful, assertive investigation” (Erlandson, Harris, & Skipper, 1993:161); triangulation8 through interviews with people with dementia, participant observation, photography and focus groups with people with dementia and their significant others, and use of the literature; referential adequacy with current and historical photographs of people,

8 While I recognize that ‘triangulation’ can be a problematic strategy for ensuring trustworthiness of data, it is still considered to be “the primary analytical method” for multi-methods research (Kirby et al., 2006:238). Rather than treating triangulation as a test of validity, a convergence of data sources such as this is better viewed as “a way of ensuring comprehensiveness and encouraging more reflexive analysis of the data” (Mays & Pope, 2000: 51).

135

settings/events, and significant objects; peer debriefing through discussion of the research process and emergent categories with researchers in dementia/ageing; member checking in seeking responses to working hypotheses and observations from the participants in subsequent interviews and to written and oral summaries of the findings at the focus groups; reflexive journal in which I recorded my thoughts throughout the research process; purposive sampling for selection of all participants; and an audit trail through entry of all documents created since the start of the research in an N⁎VIVO project file. As the findings reported herein are derived from exploratory research with a small sample of community-dwelling older people with dementia, they should be interpreted with caution. Exploratory research of this nature should be replicated in another social context to determine the transferability of the findings; or the findings used to inform research with a larger and even more diverse sample of older people with dementia, should generalizability be the goal. That said, through exploring in-depth the experiences of a diverse group of older people with dementia and their significant others, I was able to confirm the connection between social location and subjective experiences of dementia and to develop a theory as to the nature of these relationships. The findings demonstrate the diversity of older people's experiences of dementia, which range from ‘not a big deal’ to a ‘nuisance’ to ‘hellish’ and are associated with the respondent's social locations, with the multiply privileged older people holding the most negative views of dementia and the multiply marginalized older people largely dismissing the significance of dementia. It may well be that these findings have transferability to another sample of people with dementia that is socio-culturally diverse, as they are based on a rich and substantial data set. Life with memory problems — from ‘not a big deal’ to ‘hellish’ While there has been an explosion of interest in ascertaining the views of people with Alzheimer's disease and other forms of dementia about their illness experiences, these efforts have been rather limited in scope, in that the focus has been on a narrow range of people. As found by Hulko (2002), the typical person with dementia encountered in published accounts of living with Alzheimer's disease or another form of dementia is a middle-aged (40 to 60 years old), well-educated, white, married professional in the early stages of dementia, with strong religious or ideological beliefs, and a supportive family. Despite the lack of diversity of past respondents, it is this ‘partial view’ (Henderson, 1998) — and an overwhelmingly negative one at that, that has shaped service delivery for all people with dementia. As became apparent through the course of this study, however, if a diverse group of individuals are sought out and asked for their opinions about dementia, a very different image of ‘the experience of dementia’ emerges. Indeed, we cannot say there is one experience; rather there are a multitude of experiences that reflect the degree of privilege and oppression to which people with dementia are subject, based on their gender, ‘racial’, ethnic, and class backgrounds — that is, irrespective of their shared status as persons living with dementia.

136

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

The description of past respondents above almost perfectly matches the multiply privileged participants in this study, with the exception of their ages, the average age of my sample being 77 years. I do not mean to suggest that the findings from this study are generalizable to all older people with dementia, as the sample is far too small to make such a claim. Rather, I simply want to point out that the negative portrayals of dementia found in the literature only correspond to the participants in this study who are most similar to these earlier narrators in terms of their social locations. As this article demonstrates, with a diverse sample, only a minority of the views expressed may conform to our present understandings of life with dementia, from the perspectives of people with dementia themselves. The remainder of this article details this continuum of perspectives on life with memory problems, ranging from ‘not a big deal’ to ‘hellish’; and explains the connection between older people's experiences of dementia and their social location, from an intersectional perspective. When I asked older people with dementia what it is it like to have this form of cognitive impairment, their responses ranged from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’. That is, very few actually described dementia in the negative terms employed by prominent books about living with dementia, such as those cited in the introduction. There was more of a diversity of opinion than has been seen in the literature to date and more importantly, these varying views correlated with the social locations of the respondents. The more marginalized people dismissed the significance of dementia in their lives and the more privileged ones confirmed the commonly held belief that dementia is a living hell, as illustrated by the following extract from the second interview with Jim Heather: Interviewer: Now how, what is it like to have Alzheimer's?

Joe Brown: Don't bother me. Interviewer: Don't bother you? How come it doesn't bother you? Joe Brown: I pay my bills, what else I gotta do. What, what else have I got to do, what other memory do I got to have? As can be seen in the description of the participants presented earlier, the three men in the sample held different amounts of privilege and oppression. This is important for understanding Joe Brown's dismissal of the significance of dementia in that his communicative competence may not have been as bound to his self-identity as it seemed to be for the two other men in the sample — Jim Heather and Gus Holden, both of whom held more privileges than Joe Brown, on the basis of their racialization (whiteness) and social class (upper middle class). As noted, several of the participants dismissed the significance of having dementia, some writing it off as age related and others focusing on the lack of impact it had on their lives. This appeared to be a more common response amongst those who were less privileged in terms of social location. For example, as Joe Brown stated several times: ‘I'll tell you one thing about life, you remember what you wanna remember and you forget what you wanna forget….’ He did not see dementia as being significant or problematic in his life because, as he said: ‘‘long as I can take care of Joe, that's all I'm worried about’. When I tried to ascertain whether or not Angela Huggins felt that dementia mattered in her life, she pointed out that ‘old age’ posed more challenges for her than dementia: Angela Huggins: Well I guess I'm lucky because I have a family around me. It's not something I'm ashamed of or anything like that. I, I don't really think it matters.

Jim Heather: Hellish. Interviewer: Hellish? Jim Heather: Hmm. For Jim Heather, the world ‘hellish’ summed up his views on living with dementia (see Davis, 1989; DeBaggio, 2002). When I asked him to elaborate on this, he went on to talk about the symptoms or limitations that it posed: Well, having um a difficulty coming out with the right words for example or phrases or um having difficulty with uh numbers and um dates, times, um having difficulty coming up with um, difficulty um, coming up with just a common expression uh, or um even words that are very frequently used by anyone without the disease and um having difficulty coming up with just ordinary expressions… In contrast, for Joe Brown, forgetting things was not such a big deal, as his memory did not play a big role in his life.

Interviewer: Okay, so you're more with the people that say it's not a big deal… Angela Huggins: Yeah, yeah…It's more the old age that is bothering me because I can't keep up, I can't run, like I say I can't go dancing, you know, this type of thing. Several of the participants tolerated dementia, noting the inconvenience it caused and downplaying the negativity associated with it. Bosse Knudsen dismissed the significance of her memory problems and referred to her use of humour as an important ‘coping’ technique. A typical statement of hers evokes the acceptance shown by those older people with dementia who were marginalized on at least one domain: ‘Yeah. My memory is not all that good. But here I am and here I stay [laughs]’. Bosse Knudsen stressed repeatedly throughout our final interview that she was not treated any differently by those around her, whether they were aware of her dementia or not, and that people had always accepted her for who she is. The following exchange happened in the latter half of the interview and is an example of her efforts to convince me that people do not treat her any differently because of her memory problems:

Joe Brown: I forget things that I don't wanna remember. Interviewer: Mm-hmm. But what's that like?

Bosse Knudsen: Nobody, everybody has accepted me as I am.

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

Interviewer: Mm-hmm. So you don't think there's anything wrong? Bosse Knudsen: It might be that I have it [Alzheimer's] but what I am trying to say is they, they accept me the way that I am. Interviewer: Okay, well, how about how you feel about yourself though? Bosse Knudsen: I feel good about myself. Interviewer: Do you feel any different? Bosse Knudsen: No. Interviewer: No. Bosse Knudsen: I am just a person that has something wrong with me and everybody accept me the way I am and I think that's wonderful. For those people who accorded dementia slightly more significance than Joe Brown for example, several claimed that their memory problems were not a big deal, as the things that they tended to forget really were not that important. For example, Angela Huggins noted that ‘I don't forget things I'm really interested in’, while Nancy Matheson indicated that ‘I always feel that if something's important, I'll remember it. I usually do’. Others described it as more of a tolerable inconvenience. For example, Bosse Knudsen said: ‘Yeah, I'm forgetful…and it's a nuisance’. While Julianna Molnar did eventually acknowledge that forgetting things caused her some emotional upset, by and large, she felt that her memory problems were quite manageable and viewed this as a normal, though not universal, condition of later life. She noted: It's a normal thing that at this age, certain things a person forgets, but they are, there are others who are able to keep their memory. My husband is six years older but has a fantastic memory. The more pessimistic views of dementia were expressed by the two people in the sample with the most privilege on the basis of their gender, ‘race’, ethnicity, and class. The following quote from Jim Heather is representative of this view: …awkward knowing that in front of you lies the territory we've never experienced before and that it's getting worse uh, a slippery slope which is um, uh, either you don't know whether it's steep or going to be…gradual. Gus Holden did not have quite as negative a view of dementia as Jim Heather, yet he did clearly identify it as a problem in his life, as the following exchange demonstrates: Gus Holden: Oh, it makes a difference, no, no. Interviewer: Makes a difference?

137

Gus Holden: Yeah, yeah. You can fight it or try to overcome it or step around it, but it's there and it's not as if you can say that ‘what a nuisance, I'll push it aside and carry on uh, my regular, no, you can't, it's just a. It is a different way of life. And you can roll with it or I suppose you could go and hibernate, uh, tuck yourself away, but yes, it does make a difference. Gus Holden claimed that you cannot refer to Alzheimer's as a ‘nuisance’, as it is much more significant than that, yet ‘a nuisance’ is the exact term that Bosse Knudsen used to describe her life with memory problems, as seen earlier. While for the most part Nancy Matheson denied having any memory problems herself, she did describe what it might be like for ‘other people’ to have dementia, using familiar imagery and demonstrating some awareness of popular conceptions of life with dementia. I think they'd be sort of, it's like living in a fog, that you wouldn't know, you [hits table with open hand] wouldn't have any things [hits table again] you could grab hold of, you know as a, as a fact, that uh, yeah. I think that would be very difficult. At the following interview, I returned to her description of what it might be like to have dementia (as above plus later comments) and, as can be seen in the excerpt below, in rejecting the application of these words to her own situation, she admitted to having dementia herself, and indicated that it is not as problematic an experience for her as it is for others. Interviewer: One of the things that you talked about last time, you talked about how you thought having Alzheimer's would be like being in a fog or feeling lost and that you thought it would be very sad. So I'm wondering if you can tell me some more about that. Nancy Matheson: I don't really give it a thought. I don't really think about that. I don't feel like that. Uh-uh. I don't think so. I don't agree that I feel as though I'm in a fog. If I ever said that… Some of the participants changed their opinions or had them validated over the course of the research through being exposed to the views of other older people with dementia or having the opportunity to talk about what they were going through. Angela Huggins pointed specifically to the opportunity to compare herself with others as an element that she liked about being part of the research and noted how this had affirmed her own approach to dementia, which was to dismiss the significance, not to worry about it, and to focus on her remaining abilities. Interviewer: …Okay, well what did you like about the experience, about being a part of this research? Angela Huggins: Well because I learned that there are other people who are worse off than me and some, you know, their- their trials, what is- what is bothering them, how they adapt. And then, then I think how lucky I am that I'm not as — My God, if I had- I think I would go crazy, if

138

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

everyday I was saying, ‘Oh god, I can't do this and I can't do that.’ Oh no. Gus Holden referred more to his own developmental growth that occurred over the course of the research, as opposed to himself in relation to others. At the start of each interview, he shared with me a self-assessment, focusing mainly on his mood and ability to perform tasks. Below is one of these reviews, taken from the final interview, and indicating progress towards the state of equilibrium that Gus Holden referred to having attained at the end of the research process. This week has been good up ‘til today. And today I feltnothing to do with you coming at all [laughs] - but uh, it was still reasonably better than it used to be. Because there are times when I thought ‘No, this day is just hopeless; I just haven't been able to do anything.’ I keep on trying mind you. But uh, others I feel I've really done something and yes, I understand that, and I remember what I did yesterday kind of thing. So, it's been up and down, but I would say, oh [sighs], since the beginning, this has been a good week. As Gus Holden adapted to his illness experience and was able to find meaning and purpose in his daily life and focus on his ‘retained abilities’ (Zgola, 1999), he expressed less pessimism about living with dementia. That is, as he found ways to ensure that his emotional needs were met, dementia became more tolerable, though it could never be termed simply a nuisance. As has been shown, there was real variability in the experiences of older people with dementia and their reactions ranged from seeing it as ‘not a big deal’ to ‘a nuisance’ to ‘hellish’. These views were not static, however, as some people moderated their opinions over time, others divulged more feelings as trust increased, some learned to adapt to the limitations posed by dementia, and others had their views reinforced by hearing of the experiences of other older people with dementia. The connection between social location and experiences of dementia will be detailed in the next section, making use of the theoretical framework introduced earlier. Analyzing the findings, from an intersectional perspective Throughout the research process, the research question remained paramount and guided the data collection and the analysis; thus, the overriding concern was with uncovering the role and influence of intersectionality and interlocking oppressions on the participants' subjective experiences of dementia. It became clear that the participants could not be essentialized or reduced to certain aspects of their identities in order to make sense of their varied perspectives on living with dementia. Something about having experienced marginalization on more than one domain and being privileged in more than one area appeared to be shaping the participants' views on life with dementia and affecting their preoccupations, particularly whether the latter were more instrumental or more socio-emotional in nature. Being more focused on instrumental than socio-emotional preoccupations correlated with viewing dementia as ‘not a big deal’ or a ‘nuisance’ rather than ‘hellish’, which was related to having socio-emotional preoccupations.

Marginalization and instrumental preoccupations As noted previously, the more marginalized people in the sample did not see dementia as particularly problematic. They appeared to be preoccupied with their physiological and safety needs (Maslow, 1970) or what are often conceptualized as ‘activities of daily living’ (ADLs) and ‘instrumental activities of daily living’ (IADLs) in the dementia literature (see Beck, Zgola, & Shue, 2000). I will refer to these as instrumental preoccupations, as these were not expressed as needs per se; rather, they were discussed as aspects of daily life that required attention from the older people with dementia and often raised concerns for their significant others. As long as the memory problems they were experiencing did not interfere with their ability to attend to these instrumental preoccupations, dementia was not something to worry about. Joe Brown expressed this sentiment in the first interview and repeated it at the observation session that followed. I remember what I want to remember. I don't forget to pay my rent, to pay the hydro, etc. I eat, I sleep. Listen, dear, I'm 75 years old. Life's not the same when you're older. He also talked of the importance of being able to take care of oneself and stressed that this was something that he had been doing successfully his whole life. It was clear, however, that other people in his social world helped Joe Brown to maintain his independence and that sometimes this was appreciated, yet at other times, it was not; Joe Brown's receptivity to assistance depended upon whose involvement was required. Both of these instances are illustrated by an excerpt from my field notes written after our first meeting. While I was on the phone [talking to his niece about the research], someone banged on the door and gave Joe a pack of fish; he said people looked out for him and wondered if I told the woman downstairs why I was here. I said no as I wasn't sure if it was her business and he agreed that it wasn't her business and told me not to talk to her about why I was there. Joe Brown lived in a social housing building for older people and ‘the woman downstairs’ was the manager of the building; he was worried that if I reported to her that he was having difficulties living on his own, she would force him to move out of his apartment. He described this normalcy (the rhythm of his daily life) that he was afraid of losing thus: Whatever I do today, ain't, ain't gonna be no different than tomorrow. I get up, eat my breakfast, watch television, go out on the street, walk around, come home, watch TV and relax, bullshit, know. Angela Huggins spoke of her ability to satisfy these instrumental preoccupations in order to counteract her daughter's concern about the effect of her memory problems; she dismissed as unimportant her inability to remember what she ate for lunch, focusing instead on the fact that she knew whether or not her nutritional needs had been met: …Like if you say ‘what did you have for lunch today’ and I sit here and I'm thinking, I, it's not important, why are you

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

139

asking me this nonsense for god's sake. I mean I ate, I did eat, I'm not starving. But she [daughter], she wants to know every little thing you know what did I do, blah, blah. She, she's practicing her social work on me [laughs].

Interviewer: Ester…[start of attempt to diffuse the situation]

Further evidence of these instrumental preoccupations on the part of the more marginalized participants is provided by two exchanges between Ester Hernandez, the most cognitively impaired participant, her daughter and I. The topic is cooking, which I had suspected might be a source of conflict in the home based on this first interaction, which took place during the second observation session.

Julianna Molnar's attention to instrumental preoccupations are indicated by her concern with ensuring that her guests were adequately fed and watered at each interview and through her story of the difficulties she had walking and going to the grocery store. The latter was raised in the third interview in response to a question about whether forgetting has changed her sense of self in any way.

Maria [Ester's daughter] talked of how she hates cooking but likes cleaning and how her mother is good at cooking and asked her [mother] why she can't do the cooking, to which Ester replied ‘I don't remember’. Ester then said ‘she knows everything [gesturing to Maria], but the mother knows nothing’. Maria tried talking with her mother about making Filipina food which she used to do as a caterer and I encouraged Ester to tell me the ingredients and how she made things. She tried to tell me how to make ‘puto bung bung’ but could not remember and asked Maria for help.

It wasn't that I'm forgetting that changed me. It's more so that I'm having more difficulty moving, having more difficulty doing things. For example, I'm…um…I'm scared to go out alone for a walk. Now that my husband is not home…I have my walker there. If I really have to go to IGA [grocery store]…if the sun's shining, I might go a little further and then I come back. But I'm always holding on to that [indicates walker].

Ester Hernandez: There is nothing wrong.

Interviewer: Now you used to do a lot of cooking, didn't you?

The findings demonstrate that instrumental preoccupations amongst the more marginalized participants can be seen in talk of groceries, cooking, eating, sleeping, walking, and paying bills, for example. Conversely, discussion of instrumental preoccupations such as these was not at all pronounced in the interviews with the more privileged people with dementia; if these preoccupations featured at all, it was in relation to the concerns of others about the person with dementia getting lost while driving or walking, or the participant needing a glass of water during the interview, for example.

Ester Hernandez: I am cooking by myself.

Privilege and socio-emotional preoccupations

Interviewer: By yourself?

The most privileged people in the sample had the luxury of being preoccupied with socio-emotional concerns, as instrumental preoccupations were rarely an issue. A positive relationship between social class (family income and educational level attainment) and basic needs fulfilment has been found in survey research with community-dwelling adults (Acton & Porntip, 2000), suggesting that basic needs fulfilment facilitates health promotion and self-care behaviour. For the most privileged participants in this study, dementia was a very big deal largely because ‘higher order needs’ (Maslow, 1970) or socio-emotional preoccupations were more affected by dementia and required the active involvement of others for fulfilment/alleviation. Jim Heather spoke often of ‘the slippery slope’ and was preoccupied with the impact of his having dementia on his family members, particularly his becoming a burden to his wife and the reactions of his grandchildren, as well as the quality and duration of the disease trajectory. His words evoked a sense of the existential concerns he was contemplating:

The prospect of not being able to attend to instrumental preoccupations through cooking appeared to cause Ester Hernandez some distress in the second exchange, taken from the final interview, although my efforts to clarify the situation probably contributed to her distress.

Ester Hernandez: Yeah, eating. Interviewer: And how does that go for you? Do you have…? Ester Hernandez: Noth-, nothing, it goes for me for eating my, myself and my granddaughter. Interviewer: Do you, do you manage okay cooking for yourself? Interpreter: [repeats in Tagalog] Ester Hernandez: [in Tagalog] Yes, [in English] I can do it by myself. Interviewer: Okay, okay. Can you, what do you think it would be like if you couldn't do it for yourself? Ester Hernandez: What? Interpreter: [repeats in Tagalog] Ester Hernandez: [in Tagalog] Why, why can't I, why can't I cook? [In English] I can cook it by myself.

…and um I'm concerned about [my wife] um having the same feeling, you know is this going to be steep or shallow or what is it going to be and how is it going to affect both of us and what, what's, what um can we do or you know, you really feel that you've got no attack, from our point of view to prevent what's going to happen.

140

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

Gus Holden similarly focused on his family and the role that they played, particularly his spouse Sue: ‘If a man doesn't have a wife that's patient, they're in trouble’. As he was talking about the significance of his wife's support, she entered the room and Gus Holden chose to express his thanks to her: ‘It's wonderful to have, uh, to see, uh. Without her, I'd probably be tucked away in some in-, institution’. He also talked of the impact his dementia had on his ability to perform tasks that were associated with his prior career as a university administrator and the traditional gender roles in his household, which were being challenged by his memory problems. In the first interview, Gus Holden described some of the difficulties he had been experiencing in managing the family accounts. When he returned to this topic in the second interview, he connected his task performance with gendered role expectations in the household, and it became clear from the content and delivery of his words that dementia was impacting on him on a socio-emotional level: ‘It's when I am trying to do something that I've always done, well, finances is a good example. Uh, I've always looked after the family finances… That doesn't, Sue [spouse] not, she hasn't looked after the books so to speak, I have. And uh more and more I am finding it difficult to just sort simple things’. In the final interview, he spoke about the impact of his memory problems and referenced again these socio-emotional preoccupations. Uh, I must admit there've been times when I've felt that Sue has sort of abandoned me because she's so busy, she has so much going on and uh, she's inclined to say, ‘Well, you did such and such,’ uh, yes, of course I don't remember that…so I'm not, I'm not reacting properly. I should take it that it's a problem for her and the girls [daughters] and for anybody else to not understand uh, I guess I've said to myself several times, ‘Oh, if only so and so could have a day feeling the way I do; that would make them understand what it's like.’ Because you can't explain it as far as I'm concerned. I don't feel, uh, there are words to explain it, but I don't feel the words, the vocabulary I have will get that feeling across. Uh, but uh, I'm feeling, yeah, I think I'm feeling better. That it was a long slide down, levelled off and I sort of [clears throat] almost gave up, I mean I chat with you, sort of, what's going to happen, how long can I possibly go on like this, and then, I would say that the last two weeks, maybe three, have improved. Now that doesn't mean that everyday I get up and say, ‘By golly, I got this,’ nothing like that. But I come down and I say to Sue, ‘I think this is going to be a good day.’ And there's nothing specific…it's not long before I think, oh yes, here's something that oughta be done and I'm going to tackle that first so uh, I…9 The one multiply privileged woman – Nancy Matheson – referenced or displayed socio-emotional preoccupations more often than instrumental ones. She did employ a

9

This approach that involves struggling against dementia and ‘tackling’ things that ‘oughta be done’ was employed by the men more often than the women in this study — an interesting finding that merits further exploration.

personal support worker to ensure that her instrumental preoccupations were satisfied, however, providing a strong example of social location mediating experiences of dementia. In the first interview, after confirming that her independence was important to her, Nancy Matheson told me of the pleasure she derived from living on the 21st floor and entertaining ‘lots of people’: Interviewer: I, I get the sense that your independence is quite important to you. Nancy Matheson: Well, yes. I think it is to most people. Interviewer: Yeah, I think you're right. I think it is to most people as well. Nancy Matheson: Yeah, mm-hmm. Interviewer: Yeah. Nancy Matheson: Yeah. I enjoy living on this floor, I have lots of people that come to see me and uh, uh, you know we have great discussions and everything and uh, I love it like that. In looking at the photos from the first observation session, which took place primarily in the kitchen of her spacious condominium, Nancy Matheson once again drew my attention to her surroundings and the view from the 21st floor, overlooking a large urban park10: Nancy Matheson: This is my friend Barbara [personal support worker] in the kitchen…Barbara and… [chuckles quietly] a picture of Barbara and me at the table [laughs again wistfully]. This has been a great kitchen. I've enjoyed this. Interviewer: Mm-hmm? What do you like about the kitchen? Nancy Matheson: I like the light, I like all the panes where I can see, you know, so far around the building. Mm-hmm, mm-hmm….oh yeah… In this discussion of the significance of her living space, Nancy Matheson indicates the ways in which her condo has enabled her to attend to socio-emotional preoccupations (visitors, discussions, possessions, view, independence). As these findings demonstrate, socio-emotional preoccupations featured more often than instrumental ones for the multiply privileged older people with dementia, which affected the extent to which they saw dementia as problematic.

10 Nancy Matheson did not grant me permission to use either of the photos that she was looking at while talking in this excerpt, as she felt ‘they wouldn't mean anything to anybody’; I suspected the real reason was that the pictures contrasted with the image of herself as independent which Nancy Matheson was anxious to preserve and to present to others.

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

The dynamics of privilege and oppression Resilience — as an acquired characteristic, rather than an innate feature, proved important in interpreting these differences in participants' experiences of dementia. It may well be that older people with dementia who have experienced discrimination or disadvantage in their lives prior to developing dementia, on the basis of racialization, gender expression, ethnic group membership, and/or socio-economic status, are able to apply this resilience to their lives with dementia. In this way, dementia becomes one more hurdle to overcome or just another thing to be getting on with in life, much in the way that older lesbians and gay men respond to growing older, and negotiate age-based discrimination (Brotman, Ryan, & Cormier, 2003). As found in earlier research (Hulko, 2002), social location clearly affects how one views dementia and how one lives with it. While studies are emerging that focus on socioculturally diverse older people with dementia and actually solicit their views, as opposed or in addition to the caregivers or service providers, the tendency has been to isolate one identity factor, such as gender (Proctor, 2001), sexual orientation (Ward, 2000; Ward et al., 2005), and ‘race’ or ethnicity (see for example Bowes & Wilkinson, 2003; Henderson & Henderson, 2002). While power in relationships and feelings of powerlessness were central themes in Proctor's (2001) interviews with four older women with dementia in a day hospital, it is unclear whether the power dynamics were related to their being women or being members of a traditionally disempowered group. This study builds on Proctor's (2001) findings in that it shows the linkages across various forms of oppression and privilege and how an individual's social location, which may be multiply marginalized, multiply privileged, or somewhere in between, can be seen to shape their experience of living with dementia. That is, the dynamics of privilege and oppression may be ‘structuring and destructuring the course of illness’ (Gubrium, 1987), as opposed to the particular identity category itself. Holding negative views of dementia may have more to do with how much privilege is afforded the particular social group(s) to which one belongs, than the fact that one is a man, or White, or majority ethnic or upper middle class, for example. The power associated with these subject positions — in a particular time and place, is the key factor. Conclusions and implications for research, policy, and practice Several conclusions can be drawn from these findings on experiencing dementia and the intersections of ‘race’, ethnicity, class, and gender. First, the benefits of engaging with ‘the white elephant’ (Albee, 1965) – in this case dementia – are clearly evident. Asking people with dementia about their experiences of living with a disabling condition such as this can generate rich data that not only challenge our existing knowledge base, but also lead us towards a deeper and more complex understanding of this bio-psycho-social phenomenon called dementia. It is indeed possible, and it is extremely valuable to undertake these sorts of investigations, both for the researchers and the researched, as argued convincingly by other researchers in this area (Bond & Corner, 2001; Carroll, Vetor,

141

Holmes, & Supiano, 2005; Dewing, 2007; Gillies, 2000; Keady & Gilliard, 1999; Phinney, 1998; Wilkinson, 2002). Moreover, it is possible to discuss complex and nebulous topics like identity and social location with older people with dementia, and yield significant insights. While socio-culturally diverse older people with dementia may not use the language of intersectionality, their words and behaviours clearly indicate the relevance/ applicability of this concept. Second, the problematization of dementia occurs within a social and political context and is not transmitted to and/or integrated into the illness narratives (Kleinman, 1988) of all people with dementia in the same fashion. The extent to which dementia is conceptualized as a problem varies; dementia is not viewed as problematic by all those who are living with it and this is related to the social location of the affected individual. Henderson (2002) has drawn attention to the fact that the limited research on cross-cultural perspectives on dementia indicates that “dementia is not universally considered a ‘devastating disease’ as is alliteratively forwarded as immutable fact in medical texts” (p.195). This study suggests that the more privileged a person, the more likely s/he will be to view dementia in a negative light; and the more marginalized an individual, the more likely s/ he will be to dismiss the significance of dementia and resist being viewed as the sum of his/her symptoms. Future research should aim to confirm these theoretical propositions through establishing transferability to other social contexts and/or generalizability based on a larger and even more diverse sample. Lastly, the data on experiencing dementia clearly show that diversity does make a difference. When we expand the pool of respondents by factoring in ‘race’, ethnicity, class, and gender, the picture of life with dementia that emerges is bound to be more nuanced and complex, as it was in this research. Future research needs to take into consideration these and other identity factors not addressed in this study, such as sexual orientation, age, (dis)ability, and faith, as these also form components of an intersectionality and interlocking oppressions framework. Not only must we acknowledge that older people with dementia may conceptualize their experiences differently from one another, but we also need to consider the probability that their views and preoccupations will vary by social location. In turn, we need to alter our practices and social policies to reflect these new understandings of life with dementia. As a first step, practitioners should not operate from the assumption that dementia is universally experienced as negative and be cautious about treating dementia as a problem if, by all indications, it is not problematic for the person who is living with it on a daily basis. An even more radical approach would be to stop intervening in the lives of people with dementia, to stop making something problematic that may not be viewed as a problem by the majority of people who have it. This is not meant to romanticize life with Alzheimer's disease or to deny the very real challenges associated with memory problems or the bodily effects of dementia (Gubrium, 1986). Rather than adopting a policy of non-intervention per se, we could view this as an opportunity for community development — with a twist. It became apparent in this research that the multiply marginalised older people with dementia might have something to teach

142

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

the multiply privileged older people with dementia. To counteract the Western trend of problematizing dementia, perhaps we should encourage a transfer of knowledge and skills in ‘human relations’ and a more expansive definition of normalcy, an approach that comes from acknowledging the strengths of marginalised communities, rather than emphasising their disadvantages (Minkler, 1996; Saleebey, 2002). At the policy and practice interface, the idea of creating dementia-friendly communities (Alzheimer Scotland Action on Dementia, 2001; Marshall, 1999) is certainly worth promoting and what this might look like should be explored in depth. This campaign is meant to address the reality that the majority of people with dementia live ‘in the community’; indeed, they are “not just receiving health services, but are moving about in our towns and cities like the rest of us” (Marshall, 1999:93). Raising awareness about dementia and increasing sensitivity towards the people who are most affected by this bio-psycho-social phenomenon would go a long way towards achieving full citizenship rights for people with dementia — rights that have not been afforded to this group of people to date (Innes, 2002). Promoting citizenship, rather than personhood, would facilitate a shift into the realm of rights and responsibilities and experiences as common/ shared — quite different than the focus on experiences as unique/individual and needs-based entitlements that are most often associated with the concept of personhood (Bartlett & O'Connor, 2007). Citizenship as a concept appears to be more closely aligned with intersectionality and interlocking oppressions than personhood does, as it focuses on the grounds upon which people are denied and/or afforded rights and responsibilities and thus enables linkages across different forms of oppression. In applying this approach to the socio-cultural context of dementia, the challenge will be not to lose sight of the diversity of dementia experiences and the social locations of people with dementia, particularly the multiple and intersecting grounds upon which this group of people may be denied their full citizenship rights, whether due to social class, sexual orientation, gender expression, or racialization processes, for example. Thus, not only do we need to promote citizenship, we need to emphasize that people with dementia are intersectional beings who may experience differential amounts of privilege and oppression in their daily lives, irrespective of their shared identity as citizens with dementia. References Acton, Gayle J., & Porntip, Malathum (2000). Basic need status and healthpromoting behaviour in adults. Western Journal of Nursing Research, 22 (7), 796–811. Albee, Edward (1965). Who's Afraid of Virginia Woolf? Harmondsworth, UK: Penguin. Alexander, Victoria D. (2001). Analysing visual materials. In N. Gilbert (Ed.), Researching Social Life (pp. 343–357)., 2nd ed. London, UK: Sage. Allan, Kate (2001). Communication and Consultation: Exploring Ways for Staff to Involve People with Dementia in Developing Services. Bristol, UK: The Policy Press. Alzheimer Scotland Action on Dementia (2001). Creating Dementia-Friendly Communities. Edinburgh, Scotland: Alzheimer Scotland Action on Dementia. Bartlett, Ruth, & O'Connor, Deborah (2007). From personhood to citizenship: broadening the lens for dementia practice and research. Journal of Aging Studies, 21, 107–118. Basting, Anne D. (2003). Looking back from loss: views of the self in Alzheimer's disease. Journal of Aging Studies, 17, 87–99.

Beck, Cornelia, Zgola, Jitka, & Shue, Victoria (2000). Activities of daily living: an essential component of programming for persons with Alzheimer's disease. Alzheimer's Care Quarterly, 1(2), 46–55. Becker, Howard (1974). Photography and sociology. Studies in the Anthropology of Visual Communication, 1(1), 1–19. Bishop, Anne (2002). Becoming an Ally: Breaking the Cycle of Oppression in People, 2nd ed. Halifax, NS, Canada: Fernwood Publishing. Boden, Christine (1998). Who Will I Be When I Die? Sydney, NSW, Australia: Harper Collins. Boden, Christine (2005). Dancing with Dementia: My Story of Living Positively with Dementia. London, UK: Jessica Kingsley. Bond, John (2001). Sociological perspectives. In C. Cantley (Ed.), A Handbook of Dementia Care (pp. 44–61). Buckingham, UK: Open University Press. Bond, John, & Corner, Lynn (2001). Researching dementia: are there unique methodological challenges for health services research? Ageing & Society, 21, 95–116. Bowes, Allison, & Wilkinson, Heather (2003). “We didn’t know it would get that bad”: South Asian experiences of dementia and the service response. Health and Social Care in the Community, 11(5), 387–397. Brah, Avtar, & Phoenix, Ann (2004). Ain't I a woman?: revisiting intersectionality. Journal of International Women's Studies, 5(3), 75–86. Braudy Harris, Phyllis (2002). The Person with Alzheimer's Disease: Pathways to Understanding the Experience. Baltimore, MD: Johns Hopkins University Press. Brotman, Shari, Ryan, Bill, & Cormier, Robert (2003). The health and social service needs of gay and lesbian elders and their families in Canada. The Gerontologist, 43(2), 192–202. Brown, Leslie, & Strega, Susan (Eds.). (2005). Research as Resistance: Critical, Indigenous and Anti-Oppressive Approaches Toronto, ON, Canada: Canadian Scholars' Press. Calasanti, Toni (1996). Incorporating diversity: meaning, levels of research, and implications for theory. The Gerontologist, 36(2), 147–156. Calasanti, Toni M., & Slevin, Katherine F. (2001). Gender, Social Inequalities, and Aging. Walnut Creek, CA: Altamira Press. Carroll, Andrea M., Vetor, Karen, Holmes, Sara, & Supiano, Katherine P. (2005). Ask the consumer: an innovative approach to dementia-related adult day service evaluation. American Journal of Alzheimer's Disease and Other Dementias, 20(5), 290–294. Charmaz, Kathy (2000). Grounded theory: objectivist and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (pp. 509–535)., 2nd ed. Thousand Oaks, CA: SAGE. Charmaz, Kathy (2002). Qualitative interviewing and grounded theory analysis. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of Interview Research: Context and method (pp. 675–694). Thousand Oaks, CA: SAGE. Charmaz, Kathy (2006). Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. Thousand Oaks, CA: SAGE. Chenitz, W. C. (1986). The informal interview. In W. C. Chenitz & J. M. Swanson (Eds.), From Practice to Grounded Theory: Qualitative Research in Nursing (pp. 79–90). Menlo Park, CA: Addison-Wesley. Cohen, Donna, & Eisdorfer, Carl (1986). Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: WW Norton. Cohen-Mansfield, Jiska (2000). Heterogeneity in dementia: challenges and opportunities. Alzheimer Disease & Associated Disorders, 14(2), 60–63. Collins, Patricia Hill (1990). Black Feminist Thought: Knowledge, Consciousness and the Politics of Empowerment. Boston, MA: Unwin Hyman. Collins, Patricia Hill (1995). Symposium on West and Fenstermaker's ‘doing difference’. Gender & Society, 9(4), 491–494. Collins, Patricia Hill (2000). Black Feminist Thought: Knowledge, Consciousness and the Politics of Empowerment, 2nd ed. New York: Routledge. Cotrell, Victoria, & Lein, Laura (1993). Awareness and denial in the Alzheimer's disease victim. Journal of Gerontological Social Work, 19 (3/4), 115–132. Cotrell, Victoria, & Schulz, Richard (1993). The perspective of the person with Alzheimer's disease: a neglected dimension of dementia research. The Gerontologist, 33(2), 205–211. Crenshaw Williams, Kimberlé (1989). Demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum (pp. 139–167). Crenshaw Williams, Kimberlé (1994). Mapping the margins: intersectionality, identity politics, and violence against women of color. In M. A. Fineman & R. Mykitiuk (Eds.), The Public Nature of Private Violence (pp. 93–118). New York: Routledge. Davis, Robert (1989). My Journey into Alzheimer's Disease. Bucks: Scripture Press. DeBaggio, Thomas (2002). Losing My Mind: An Intimate Look at Life with Alzheimer's. New York: Free Press. De Vault, Marjorie L. (1999). Liberating Method: Feminism and Social Research. Philadelphia, PA: Temple University Press.

W. Hulko / Journal of Aging Studies 23 (2009) 131–144 Desfor Edles, Laura (2004). Rethinking ‘race’, ‘ethnicity’ and ‘culture’: is Hawai'i the ‘model minority’ state? Ethnic and Racial Studies, 27(1), 37–68. Dewing, Jan (2002). From ritual to relationship: a person-centred approach to consent in qualitative research with older people who have a dementia. Dementia, 1(2), 157–171. Dewing, Jan (2007). Participatory research: a method for process consent with persons who have dementia. Dementia, 6(1), 11–25. Disman, Milada (1991). The subjective experience of Alzheimer's disease: a sociocultural perspective. American Journal of Alzheimer's Care and Related Disorders and Research, 6(3), 30–34. Downs, Murna (1997). The emergence of the person in dementia research. Ageing & Society, 17, 597–607. Downs, Murna (2000). Dementia in a socio-cultural context: an idea whose time has come. Ageing & Society, 20, 369–375. Dressel, Paula, Minkler, Meredith, & Yen, Irene (1997). Gender, race, class, and aging: advances and opportunities. International Journal of Health Services, 27(4), 579–600. Erlandson, David A., Harris, Edward L., & Skipper, Barbara L. (1993). Doing Naturalistic Inquiry: A Guide to Methods. Newbury Park, CA: Sage. Fanon, Frantz (1963). The Wretched of the Earth. London, UK: Penguin. Fine, Michelle, Weis, Lois, Weseen, S., & Wong, L. (2000). For whom? Qualitative research, representations and social responsibilities. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (pp. 107–131)., 2nd ed. Thousand Oaks, CA: SAGE. Freire, Paolo (2001). Pedagogy of the Oppressed, 30th Anniversary ed. New York: Continuum. Froggatt, Alison (1988). Self-awareness in early dementia. In B. Gearing, M. Johnson & T. Heller (Eds.), Mental Health Problems in Old Age: A Reader (pp. 131–136). Buckingham, UK: Open University Press. Gillies, Brenda (2000). A memory like clockwork: accounts of living through dementia. Aging & Mental Health, 4(4), 366–374. Glaser, Barney G. (1978). Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mill Valley, CA: Sociology Press. Glaser, Barney G. (2001). The Grounded Theory Perspective: Conceptualization Contrasted with Description. Mill Valley, CA: Sociology Press. Glaser, Barney G., & Strauss, Anselm L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine. Grady, John (2001). Becoming a visual sociologist. Sociological Imagination, 38(1/2), 83–119. Gubrium, Jaber (1986). Oldtimers and Alzheimer's: the Descriptive Organization of Senility. Greenwich, CT: JAI Press. Gubrium, Jaber (1987). Structuring and destructuring the course of illness: the Alzheimer's disease experience. Sociology of Health and Illness, 9(1), 1–24. Haney López, Ian F. (1995). The social construction of race. In R. Delgado (Ed.), Critical Race Theory: the Cutting Edge (pp. 191–203). Philadelphia, PA: Temple University Press. Harman, Guy, & Clare, Linda (2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16(4), 484–502. Harper, David (2000). Reimagining visual materials: Galileo to neuromancer. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (pp. 717–732). Thousand Oaks, CA: Sage. Harris, Phyllis Braudy, & Sterin, Gloria J. (1999). Insider's perspective: defining and preserving the self of dementia. Journal of Mental Health and Aging, 5(3), 241–256. Henderson, Cary S. (1998). Partial View: an Alzheimer's Journal. Dallas, TX: Southern Methodist University Press. Henderson, J. Neil (2002). The experience and interpretation of dementia: crosscultural perspectives. Journal of Cross Cultural Gerontology, 17, 195–196. Henderson, J. Neil, & Henderson, L. Carson (2002). Cultural construction of disease: a “supernormal” construct of dementia in an American Indian tribe. Journal of Cross Cultural Gerontology, 17, 197–212. Holstein, James A., & Gubrium, Jaber (1995). The Active Interview. Thousand Oaks, CA: Sage. Hubbard, Gill, Downs, Murna, & Tester, Sue (2003). Including people with dementia in research: challenges and strategies. Aging & Mental Health, 7 (5), 351–362. Hubbard, Gill, Cook, Ailsa, Tester, Susan, & Downs, Murna (2002). Beyond words: older people with dementia using and interpreting nonverbal behaviour. Journal of Aging Studies, 16, 155–167. Hulko, Wendy (2002). Making the links: social theories, experiences of people with dementia, and intersectionality. In A. Leibing & L. Scheinkman (Eds.), The Diversity of Alzheimer's Disease: Different Approaches and Contexts (pp. 231–264). Rio de Janeiro, Brazil: CUCA-IPUB. Hulko, Wendy (2004). Social science perspectives on dementia research: intersectionality. In A. Innes, C. Archibald, & C. Murphy (Eds.), Dementia and Social Inclusion: Marginalised Groups and Marginalised Areas of Care in Dementia Research, Policy and Practice (pp. 237–254). London: Jessica Kingsley.

143

Ikels, Charlotte, Keith, Jennie, & Fry, Christine L. (1988). The use of qualitative methodologies in large-scale cross-cultural research. In S. Reinharz & G. D. Rowles (Eds.), Qualitative Gerontology (pp. 274–296). New York: Springer. Innes, Anthea (2002). The social and political context of formal dementia care provision. Ageing & Society, 22, 483–499. Keady, John, & Gilliard, Jane (1999). The early experience of Alzheimer's disease: implications for partnerships and practice. In T. Adams & C. L. Clarke (Eds.), Dementia Care: Developing Partnerships in Practice (pp. 227–256). London, UK: Balliere Tindall. Kirby, Sandra, Greaves, Lorraine, & Reid, Colleen (2006). Experience, Research, Social Change: Methods Beyond the Mainstream, 2nd ed. Peterborough, ON, Canada: Broadview Press. Kleinman, Arthur (1988). The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books. Kontos, Pia (2003). ‘The painterly hand’: embodied consciousness and Alzheimer's disease. Journal of Aging Studies, 17, 151–170. Lambert, Helen, & McKevitt, Christopher (2002, 27 July). Anthropology in health research: from qualitative methods to multidisciplinarity. BMJ, 325, 210–213. Lather, Patricia (1991). Getting Smart: Feminist Research and Pedagogy with/in the Postmodern. New York: Routledge. Lincoln, Yvonna S., & Guba, Egon G. (1985). Establishing trustworthiness. Naturalistic Inquiry (pp. 289–331). Newbury Park, CA: SAGE. Lorde, Audre (2001). Age, race, class, and sex: women redefining difference. In M. L. Andersen & P. Hill Collins (Eds.), Race, Class, and Gender: An Anthology (pp. 177–184)., 4th ed. Belmont, CA: Wadsworth. Lyman, Karen (1989). Bringing the social back in: a critique of the biomedicalization of dementia. The Gerontologist, 29(5), 597–605. McCall, Leslie (2005). The complexity of intersectionality. Signs: Journal of Women in Culture and Society, 30(3), 1771–1800. McGowin, Diana Friel (1993). Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s. San Francisco: Elder Books. McIntosh, Peggy (1989, July/August). White privilege: unpacking the invisible knapsack. Peace and Freedom, 10–12. McMullin, Julie (2000). Diversity and the state of sociological aging theory. The Gerontologist, 40(5), 517–530. McMullin, Julie (2006). Understanding Social Inequality: Intersections of Class, Age, Gender, Ethnicity, and Race in Canada. Don Mills, ON, Canada: Oxford University Press. Mama, Amina (1995). Researching subjectivity. Beyond the Masks: Race, Gender and Subjectivity (pp. 65–88). London: Routledge. Marshall, Mary (1999). What do service planners and policy-makers need from research? International Journal of Geriatric Psychiatry, 14, 86–96. Marshall, Mary, & Tibbs, Margaret-Ann (2006). Social Work and People with Dementia: Partnerships, Practice and Persistence, Revised 2nd ed. Bristol, UK: The Policy Press. Maslow, Abraham H. (1970). Motivation and Personality, 3rd ed. New York: Harper & Row. Mays, Nicholas, & Pope, Catherine (2000, 1 January). Qualitative research in heath care: assessing quality in qualitative research. BMJ, 320, 50–52. Minkler, Meredith (1996). Critical perspectives on ageing: new challenges for gerontology. Ageing & Society, 16, 467–487. Mullaly, Bob (2002). Challenging Oppression: A Critical Social Work Approach. Don Mills, ON: Oxford University Press. Narayan, U. (1988). Working together across differences: some considerations on emotions and political practice. Hypatia, 3(2), 31–47. Nolan, Mike, Ryan, Tony, Enderby, Pam, & Reid, David (2002). Towards a more inclusive vision of dementia care practice and research. Dementia, 1(2), 193–211. O'Connor, Deborah, Phinney, Alison, Smith, André, Small, Jeff, Purves, Barbara, Perry, Joann, et al. (2007). Personhood in dementia care: developing a research agenda for broadening the vision. Dementia, 6(1), 121–142. Oommen, T. K. (1994, Feb). Race, ethnicity, and class: an analysis of their interrelations. International Social Science Journal, 139, 83–93. Phinney, Allison (1998). Living with dementia from the patient's perspective. Journal of Gerontological Nursing, 24(6), 3–15. Phinney, Allison, & Chelsa, Catherine A. (2003). The lived body in dementia. Journal of Aging Studies, 17, 283–299. Potts, Karen, & Brown, Leslie (2005). Becoming an anti-oppressive researcher. In L. Brown & S. Strega (Eds.), Research as Resistance: Critical, Indigenous and Anti-Oppressive Approaches (pp. 255–286). Toronto, ON, Canada: Canadian Scholars' Press. Proctor, Gillian (2001). Listening to older women with dementia: relationships, voices and power. Disability & Society, 16(3), 361–376. Prosser, Jon, & Schwartz, Donna (1998). Photographs within the sociological research process. In J. Prosser (Ed.), Image Based Research (pp. 115–130). London, UK: Falmer Press. Reid, David, Ryan, Tony, & Enderby, Pam (2001). What does it mean to include people with dementia? Disability & Society, 16(3), 377–392.

144

W. Hulko / Journal of Aging Studies 23 (2009) 131–144

Robertson, Ann (1990). The politics of Alzheimer's disease: a case study in apocalyptic demography. International Journal of Health Services, 20(3), 429–442. Saleebey, Dennis (2002). The Strengths Perspective in Social Work Practice, 3rd ed. Boston: Allyn & Bacon. Seman, Dorothy (2002). Meaningful communication throughout the journey: clinical observations. In P. Braudy Harris (Ed.), The Person with Alzheimer's Disease: Pathways to Understanding the Experience (pp. 134–149). Baltimore, MD: Johns Hopkins University Press. Snyder, Linda (1999). Speaking our Minds: Personal Reflections from Individuals with Alzheimer's. New York: W.H. Freeman and Company. Snyder, Linda (2001). The lived experience of Alzheimer's: understanding the feelings and subjective accounts of persons with the disease. Alzheimer's Care Quarterly, 2(2), 8–22. Steeman, Els, de Casterlé, Bernadette Dierckx, Godderis, Jan, & Grypdonck, Mieke (2006). Living with early stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54(6), 722–738. Strauss, Anselm, & Corbin, Juliet (1998). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd ed. Thousand Oaks, CA: SAGE. Svanström, Rune, & Dahlberg, Karin (2004). Living with dementia yields a heteronomous and lost existence. Western Journal of Nursing Research, 25(6), 671–687. Valentine, Gill (2007). Theorizing and researching intersectionality: a challenge for feminist geography. The Professional Geographer, 59(1), 10–21.

Verloo, Mieke (2006). Multiple inequalities, intersectionality and the European Union. European Journal of Women's Studies, 13(3), 211–228. Vincent, John A. (1995). Inequality and Old Age. London, UK: UCL Press Ltd. Ward, Richard (2000). Waiting to be heard: dementia and the gay community. Journal of Dementia Care, 8(3), 24–25. Ward, Richard, Vass, Antony, Aggarwal, Neeru, Garfield, Cydonie, & Beau, Cybyk (2005). A kiss is still a kiss? The construction of sexuality in dementia care. Dementia, 4(1), 49–72. Wenger, Clare (2002). Interviewing older people. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of Interview Research: Context and Method (pp. 259–278). Thousand Oaks, CA: Sage. Wilkinson, Heather (2002). The Perspectives of People with Dementia: Research Methods and Motivations. London, UK: Jessica Kingsley. Woods, Bob (2001). Discovering the person with Alzheimer's disease: cognitive, emotional and behavioural aspects. Aging & Mental Health, 5(Supp 1), S7–S16. Wuest, Judith (1995). Feminist grounded theory: an exploration of the congruency and tensions in two traditions in knowledge discovery. Qualitative Health Research, 5(1), 125–137. Yuval-Davis, Nira (2006). Intersectionality and feminist politics. European Journal of Women's Studies, 13(3), 193–209. Zgola, Jitka (1999). Care that Works: a Relationship Approach to Persons with Dementia. Baltimore, MD: John Hopkins University Press.